Time for People with Disabilities to ‘Make the Rules in Our Own Lives’

TheTyee.ca – news – Paul Caune of Civil Rights Now has powerful ideas for next BC election.
November 5, 2012.   By Tom Sandborn

“People with disabilities don’t need self esteem programs or a hug from someone in a pink shirt. We need a good lawyer and our own money. Remember the Golden Rule. If you have the gold, you make the rules. It’s time for people like me to make the rules in our own lives. Politicians don’t see the light until they feel the heat.”

In a room full of autumn sunlight, books and stacks of documents, Paul Caune moves from his cluttered desk to the accessible balcony of his apartment in a motorized wheelchair. He wears a crisply-ironed red shirt, and his stream of eloquent argument, well-practiced epigrams and research citations is delivered haltingly in a voice that depends on the support of a mechanical respirator mounted on his chair.

Caune is one of the founders of Civil Rights Now, a group dedicated to putting more power in the hands of people in B.C. living with disabilities. On this day in late September, the fifth anniversary of his “escape from the George Pearson Centre” (a 60-year-old institution for people with disabilities), he met with The Tyee to discuss his campaign to influence the next B.C. election.

WHAT DRIVES PAUL CAUNE?

While Paul Caune emphasizes that problems facing disabled B.C. residents are system-wide, he has particularly sharp criticisms of the George Pearson Centre where he lived from 2005 until 2007 (he now lives in an accessible, purpose-built apartment administered by theVancouver Resource Society.) During that time, Caune said he experienced indifferent or hostile staff, bureaucratic delay, lack of privacy, and at least one instance of physical abuse, which the involved staff member eventually acknowledged and apologized for.

He said many of his fellow residents had similar experiences, including being allowed only one shower a week, being put to bed early at the whim or convenience of staff and having belongings stolen during their stay at the centre.

In 2008 the BC Coalition of People with Disabilities’ (BCCPD) CARMA program conducted its “Envisioning Home” study in collaboration with the Pearson Residents Council. Residents interviewed highlighted concerns about shower frequency as key complaints about their experience at the centre. The study says, in part:

“Residents understood the need for a routine within GPC (George Pearson Centre) but many criticized the inflexibility of it. Residents consistently gave three examples in which the routine challenged the reality of GPC as home: being able to have a bath or shower more than once a week; being able to go back to bed for a rest and then get up again during the day; and having to remain in bed on days when they were to have a bowel routine. Residents wanted a greater degree of control over these aspects of their lives. They described these three things as being pretty basic and that they were really about having some control over your own life.”

One Pearson resident interviewed for a YouTube video associated with thestudy said, “We’re in a prison here.”

The Tyee contacted Romilda Ang, manager at George Pearson for comment on Caune’s criticisms, but she did not respond. However, Anna Marie D’Angelo, media spokesperson for Vancouver Coastal Health which administers the centre, took strong exception to Caune’s claims of abuse, theft and long delays between showers for the centre’s residents.

In an Oct. 26 email to the Tyee, D’Angelo wrote:

“The frequency of resident baths or showers is part of individual resident care plans. Paul is correct that some shower weekly; however all residents have a basin bath at least daily, and many shower with the swim program during the week. The minimum is one a week; at times when residents have skin integrity issues and/or sweat a lot, they would be provided with more showers. When a resident requests more than one shower/bath, it is considered and every attempt to incorporate it into the daily activities of the care providers is made.”

She said there had been no thefts of patient possessions reported at Pearson since the spring of this year, and emphasized that all patients have access to a locked drawer in their room and are encouraged not to have large amounts of money with them at the centre.

In response to Caune’s claim that abuse of patients has occurred at Pearson, Ms. D’Angelo wrote:

“Abuse of any kind is not tolerated and those who live and work in Vancouver Coastal Health are guided by the organization’s Respectful Workplace policy. If abuse is identified, investigations are conducted and if appropriate, discipline follows. Residents are not informed of confidential details of this process but are aware an investigation is underway. There is a whistleblower policy in place; and residents, families and staff are encouraged to speak up about anything that concerns them regarding quality of care.

“Complaints are welcomed by the Manager at any time and residents are free to discuss issues with the Manager. Fear of reprisals is not tolerated. Since 2010 we also have the Patient Care Quality Office, which is independent of the health authority, and residents can contact that office for an independent review of their complaint about care if they are unsatisfied with how VCH has handled it.”

On Oct. 25, the City of Vancouver’s Persons with Disabilities Advisory Committee expressed its generally negative view of the treatment of disabled residents at Pearson by passing resolutions urging the City to deny the centre approval for any redevelopment plans for the property that would include an institution.

Instead, the committee urged, the City should “incorporate accessible housing options other than institutional living for current George Pearson Centre residents as part of other developments, including those proposed along the Cambie Corridor.”

Caune, who is vice chair of the advisory committee, moved the first resolution and supported the second.

– Tom Sandborn

He says his experience of being treated “like a potted plant” during a two-year stay at the centre inspired his efforts to organize better treatment for all disabled people. He left the centre five years ago.

“Disabled residents of British Columbia are vulnerable to a provision of community or institutional care that falls below a generally acceptable standard, a situation that does not allow them to live with confidence in safety, with freedom and dignity,” he said. “The main reason for this is the excessive amount of discretion available to government and contractors respecting the services provided to disabled people.”

Caune, 44 and a self-described “middle class son of the suburbs,” might seem like an unlikely political activist. But his experience with the progressive disability caused by the muscular dystrophy he was born with, and with a system of public services and residences for people with disabilities that he says are over-bureaucratized, inefficient, heedless of citizens’ Charter rights and sometimes abusive, has inspired his turn toward political organizing.

With Vancouver-based Urban Sherpa Films, he’s currently producing a documentary about the state of Canadians with disabilities’ civil rights called “Hope Is Not A Plan.”Recently he learned from his member of parliament that he was chosen to be one of the B.C. recipients of the Queen Elizabeth II Diamond Jubilee Medal, described as a way to “recognize outstanding Canadians.”

And with Civil Rights Now, the group he helped found in 2009, Caune is determined to make every candidate in the next provincial election take a position on two key law reforms he argues will dramatically improve the lives of B.C. residents with a disability who require government-funded long-term care and/or personal care aids.

Two big reforms

According to the 2006 Canadian census, 16 per cent of B.C.’s population live with some level of disability, which amounts to over 650,000 people. However, in August 2012, only 99,583 British Columbians were receiving provincial disability assistance, a number that includes some spouses and dependent children who are not themselves disabled.

Before the next provincial election, Caune hopes to have Civil Right Now activists present at public debates to publicize their proposed reforms. Caune and volunteers will challenge candidates from all parties to support two model bills: the Community Care (Direct Payments) Act and the Civil Rights of Persons in Community Care Act.

The aim of the proposed Community Care (Direct Payments) Act is to provide access to portable, individualized funding for all disabled people to use at their discretion for their own personal care. Once eligibility is confirmed in this model, which has been tested in many other jurisdictions in the U.S. and the U.K., payments would be made directly to the disabled person or their representative from the Ministry of Finance.

In 2010, fewer than 850 disabled British Columbians were able to directly administer government money allocated for their care aid support through the Choice In Supports for Independent Living (CSIL) program, according to a spokesperson for the Ministry of Health in an Oct. 26 email.

Tim Louis, former Vancouver city councillor and lifelong disability activist who played a key role in persuading Mike Harcourt’s NDP government to establish the CSIL program in 1993, told the Tyee that he enthusiastically supports Caune and the reforms proposed by Civil Rights Now.

“Caune is very impressive,” Louis said. “Extending the CSIL model to more people in B.C. is very desirable. It shifts delivery of services from a medical model to a civil rights model.”

Independent, user-controlled funding for all disabled people, (“the Golden Rule” part of Civil Rights Now’s suggested reforms) as provided under the proposed Community Care (Direct Payments) Act will, Caune argues, give disabled people the power over their own care that would flow from controlling the government funds allocated for housing, home care and the like.

“Individualized funding should be available to people with disabilities, or their legally recognized decision-makers, wherever they are living, either in a long-term residential care facility or the community,” Caune told the Tyee.

“Parents of children with disabilities should also have individual funding available to purchase goods and services to meet the relevant disability needs of their children. I don’t think individualized funding is needed for the services a person receives in an acute care hospital.”

Christine Gordon, staff member at the BC Coalition of People with Disabilities, shares Caune’s enthusiasm for individual funding for the disabled. In an email exchange with the Tyee, Gordon noted that the coalition has long supported individualized finding as a choice for people with disabilities.

“From 1997 to 2002,” she said, “the coalition sponsored an individualized funding project to promote this option. There is now a growing and robust literature that illustrates that individualized funding can improve the quality of life for people with disabilities and deconstruct the ‘institutionalized community’ that the current array of managed support services creates.”

The proposed Civil Rights of Persons in Community Care Act, which would be administered by the attorney general, is designed to enable investigations and possible civil action resulting from a breach of the Charter rights of disabled persons by government or contractors.

“Like all Canadians, people with disabilities are guaranteed certain freedoms under the Charter,” Caune says. “But unless you have the access to legal help to enforce your rights, they don’t really exist.”

The second proposed law reform would create a body that would allow B.C. residents with disabilities to take court action to enforce their Charter rights, which are often breached or ignored within the service bureaucracies and residences that serve them, Caune argued. It would resemble thefederal Court Challenges program he said (cancelled by the Harper government in 2006), which funded legal challenges by Canadians who were experiencing denial of their Charter rights.

Gov’t ‘not considering’ changing models: Bond

When contacted on Oct. 25 about Caune’s proposed changes in funding to provide support for Charter challenges by the disabled, B.C.’s Minister of Justice and Attorney General Shirley Bond told the Tyee:

“Legal aid services available in B.C. provide support to many individuals, including those with disabilities, so we are not considering changing the current model at this time. Despite government’s challenging budgetary circumstances over the last several years, core funding to the Legal Services Society is up to $68.6 million, which includes a recent increase of $2.1 million. There are also a number of non-profit organizations that provide legal representation and advice services to eligible individuals, including Legal Services Society, Access Pro Bono, and law student services at UBC and UVic.”

In contrast to this view, eminent B.C. lawyer Leonard T. Doust, Q.C. writing in a public commission report on legal aid in 2011,commented:

“Based on the evidence presented to me, I cannot come to any conclusion other than the [Legal Aid] services provided in British Columbia today are too little, their longevity or consistency too uncertain. This result is the consequence of the cutbacks and lack of sufficient and consistent financing, even though LSS has done its very best, and in my view has done everything possible, to accommodate the needs within their limited budgetary restrictions. Other groups have attempted to fill the gaps within the system, but have largely fallen short in their efforts.

“The lawyers through Access Pro Bono as well as the Law Foundation of British Columbia have made considerable efforts, but at the end of the day, I am satisfied that we have fallen from being a leader in legal aid provision to seriously lagging behind other jurisdictions. We can no longer avoid the fact that we are failing the most disadvantaged members of our community, those for whom legal aid exists within our province.”

Caune and Civil Rights Now say that medical and bureaucratic mistreatment of the disabled goes back more than a century in B.C.’s history, and has occurred under governments controlled by all parties, which is why their campaign in the upcoming election will be non-partisan and attempt to garner support from all parties.

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